52 Sundays

Dylan's last day in our home was one year ago today.  Not by the date, but by the day. 52 Sundays have passed since he was with us at home.

I hadn't figured that out before this morning in church, and when I did, I cried--right there in church, during musical worship.  I almost walked out, I was crying so much.

52 Sundays ago, October 21, at around 6 a.m., I called the doctor on call and told him that Dylan had been struggling with keeping his sats up. (Translation: his oxygen saturation was dropping below 90 percent, continually.)  Fearing the worst, I asked if we could just try a larger dose of Lasix, a diuretic he had been taking to keep his lungs dry.  We had just come back from the hospital four days earlier after not finding a culprit for his struggling, such as a bacteria or virus, and I wanted to exhaust all my options before resorting to the PICU again. He said yes, let's try it.  He gave me a larger dose and told me to follow up with him later.

Within an hour of giving Dylan the Lasix, he was breathing beautifully, smiling, and surely eager to watch his cartoons in the living room.  We gathered around him with joy.  I can't describe adequately my happiness, my relief, to see his condition improve so vastly.  That did the trick, I thought. That is what he needed--a bigger dose.  He had been taking the previous dose for 10 months and it had never been adjusted for his larger weight.  There was my answer.  I desperately needed it to be the answer.

The birthday party that we had to postpone from the week before--Dylan's birthday party--was on.  We made ribs, had grandparents over, gave Dilly ice cream, opened presents.  My heart was so full with gratitude.  It had been Jason's birthday as well, the day before--so we all rejoiced for our oldest and youngest boys.

The next day, Dylan's struggle returned with a vengeance.  After trying everything we could at home to stabilize him. I rode with him in an ambulance downtown again--for the second time that month.  For the last time, it turned out.  It took the next nine days to figure it out, but it was his body's time to fail, which is the only guarantee you have with Spinal Muscular Atrophy.

Now, 52 Sundays later, I seem to be reliving those very steps.  The ride, the hospital stay, the stable days filled with tenuous hope, and the crashes that dashed hope. Where I would normally find a one-year anniversary kind of arbitrary intellectually, my heart and body doesn't.  I am primordially wired to dread these milestones. I feel it in my core.  And I have to brace myself now to get through to November.